Helping hand

For more information and support, contact the Alzheimer's Association 24-hour help line at (800) 272-3900, or the association's Greater Pennsylvania Chapter's Erie office, 1128 State St., at 456-9200.

ERIE, Pa. -- This is the second of a two-part series.

He packed away the photographs alone.

It was too upsetting for his wife. She handled every other aspect of putting their house on the market, finding a new place and moving.

The photos he'd have to do by himself.

One by one, David Stankiewicz took down the 29 framed pictures that lined the wall along the staircase.

That wall was the first thing you saw when entering their home, reminders and mementos of a family's happy life.

There were snapshots from vacations to Disney World and the Biltmore Estate in North Carolina. Portraits taken on a colorful fall day at a park in Edinboro. Prints from the many years their daughters took tap dancing lessons.

Their new town house, which David and Lori Stankiewicz moved into last weekend, is too small to hang all 29 photographs. Only a few made the trip. The rest will remain boxed up in storage space the couple is renting from U-Haul.

It has been only 18 months since he was diagnosed with a dementia similar to Alzheimer's disease. In that short time, as his brain disease rapidly progressed, he had to quit working in the prime of his life.

The couple, unable to keep up with mortgage payments, had to sell their two-story house that they built from scratch.

"We were going to grow old here," Lori Stankiewicz said through tears in the days leading up to the move. "It's almost like we're being punished. We're losing everything."

David Stankiewicz's mother died in 2012 of complications from Alzheimer's disease. His uncle, a Pittsburgh resident, lives with dementia.

How many of us know a friend or loved one suffering from the illness? Your mother? Your grandparents? Your husband?

About 54 percent of the U.S. population knows someone living with the disease, or knew someone who died from it, according to HBO's Alzheimer's Project.

Alzheimer's is the second most-feared illness in America, after cancer, the initiative reports.

More than 5.3 million people are living with Alzheimer's, a number that is expected to surpass 11 million by the year 2040 as the baby boomer generation moves through retirement.

The Alzheimer's Association reports millions of others today also suffer from various degrees of related dementias.

"And we know there are so many more who have not been diagnosed. People out there, families, who are suffering terribly," said Debbie Wisinski, family services coordinator for the association's Greater Pennsylvania Chapter office in Erie, 1128 State St.

Dementia, and the number of people affected by the illness, is on the rise locally.

Nearly 8,500 people in Erie County in 2010 were diagnosed with Alzheimer's and related dementias, a 17 percent increase from 2000.

The Erie office conducted 373 care consultations for families and caregivers in 2012, more than quadrupling the 89 meetings in 2009. The number of people attending support groups at the office has spiked 73 percent in the same three-year time frame.

"We provide education and a lot of emotional support," Wisinski said. "Some are so overwhelmed, they don't even know what's happening."

When David Stankiewicz was diagnosed in September 2011 with frontotemporal dementia at age 49, he was far younger than people typically stricken with the irreversible brain illness.

Genetics played a role in that.

There tends to be a strong hereditary component when dementia comes on earlier in life. For proof, he didn't need to look further than his own mother.

He sat with her every day in a nursing home during her final weeks. Alzheimer's had taken a harsh toll on the 77-year-old. She was bedridden, unable to speak, and had stopped eating and drinking.

He was battered with emotions.

Part of him grieved heavily as he watched his mother die before his eyes. Part of him was scared and angry that he would likely meet a similar fate well before he ever reached his 70s.

"I just ... I wish ... I could go back. To how I was," he said recently. He then paused for a while. "But ... I can't."

Lori Stankiewicz sees the jarring changes in her husband continue to get worse.

His decimated speech patterns, fits of rage, inactivity, and detachment from her are painful reminders this is no longer the same man she fell in love with, that it's the illness doing the talking and rapidly taking over their lives.

A change in medication has curbed some of his anger, but with that switch comes side effects that have left David Stankiewicz more withdrawn and lethargic.

His memory, and ability to retain, is quickly dwindling.

"Did you get the mail?" he asked her recently.

He repeated the question three more times inside of five minutes.

He rarely smiles and hardly laughs, hallmark personality traits only a couple of years ago.

When he tries to speak and can't find the words he becomes frustrated, angrily circling his fingertips on a table as if he's drawing letters and numbers. He then often loses track and shuts down.

Before the diagnosis, Lori Stankiewicz always thought she and her husband would one day be spunky 80-year-olds living in Florida and basking in retirement.

Today, she is 46, and being told with each doctor visit how little time her husband has left.

Like other types of dementia, frontotemporal shortens life span.

Studies suggest that most people with the illness survive an average of six to eight years.

"We keep hearing no more than 10 years, and to expect something more along the lines of five years," she said with a blank stare. "Maybe we'll get more, maybe less. All we can do is just keep on keeping on."

For now, keeping on begins when they wake up together and start their morning.

She is usually quiet as she gets ready, begging God that her husband will remember her face, her name.

"I love you, David," she said the other day before giving him a hug and kiss.

He looked at his wife, and paused.

"I love you, too, Lori," he said.

She smiled.

GERRY WEISS can be reached at 870-1884 or by e-mail at gerry.weiss@timesnews.com. Follow him on Twitter at twitter.com/ETNweiss.

Helping hand

For more information and support, contact the Alzheimer's Association 24-hour help line at (800) 272-3900, or the association's Greater Pennsylvania Chapter's Erie office, 1128 State St., at 456-9200.